Saturday, October 5, 2019

541 days

Time does not stop. It keeps moving forward. Second by second. Minute by minute. Hour by hour. It builds into days. Then into weeks. Into months. And into years. Time never stops. So somehow, I find myself here. On this date. Here I am. Today.

Today, my son has been dead for as long as he fought cancer. It has been 541 days since I felt the weight of my son in my arms. Since I held him close. Since he took his last breath. Since he died, and my world cease to exist the way I once knew. 541 days. And it was 541 days before that, when I was holding my son in my arms in the Emergency Room. The day it all began. The day I was told my son had a brain tumor. The day that forever changed our lives, and forever shaped our future.

Today marks another moment in a series of time. Of new marks in time. It will now be longer that our son has been gone from this earth, than he lived fighting cancer. Honestly, how is it even possible? How did I get from that first day, to his last day, to this day? How did time keep ticking forward without my son in it? I want time to stop. But it keeps ticking. Second by second. Moment by moment. Never stopping, not for anyone, for anything.

Here I am. I am on this ride and I want off. I want off this damn ride. The nightmare never ends. I want to wake up. The world is so disorienting. I feel like everything has been shifted. And the ground will not stop moving long enough for me to get my balance. Everything is spinning. Just spinning. I can not put my feet down because there is nothing solid to stand on. I want the world to slow down, and yet it seems to keep speeding up. I am still just trying to breathe.
For the first year of grief, the goal was to just get out of bed every day. To remember to eat. To try to sleep. To attempt to care for my surviving son. Something I had little choice in accomplishing. He needed me. Just because I had no energy, did not mean he did not need me. And it was exhausting. Just breathing felt like work. And time did not stop or slow down, just because I felt like I died when my son died. I had to keep moving. If no other reason, than life keeps moving. And I had no choice, but to attempt to keep up.

The reality of child loss is there is no one to care for anyone. My husband is hurting. My son is hurting. Everyone is hurting. Everyone is grieving. The grief does not stop. And it impacts every person of the family. Because it is a child. My child. Our child. Everyone is just trying to not drown. Everyone needs to be rescued. But there is no one to rescue us. Because everyone in our family is drowning. Each of us just trying to come up long enough for another breath of air.
No one made sure I was going to make sure I had food to eat. Or a shower each day. Or that I was engaging our living child. Ultimately, once again I had no choice. And many days I failed. Failed at just those few simple tasks. Many days the only thing I accomplished was the bare needs that our living child required from me. Most days it was just dragging myself out of bed to get him to school and pick him up. Throwing him an iPad or flipping on the TV, and letting Netflix doing the parenting. Meals were of simple demand. PB&J. Noodles. Rice. Fast food. Anything that did not require my time. Or focus. Or effort. Because I could not muster the energy it required to do the simplest of tasks. Everything was overwhelming. Breathing was overwhelming. Grief swallowed me whole. I skipped meals. I skipped showers. I skipped brushing my hair. Each and every task was a huge weight that took more effort than I could bare to give. I was exhausted from just breathing.

I have spent the better part of the last 18 months battling depression, anxiety and PTSD. Yet, my responsibilities have not changed from the day before our son died. Or from the day before he was diagnosed with cancer. They were the same then, that they are now. And there is no one to do it all for me. My spouse is suffering, just as I am suffering. Our child is suffering too. We are all spiraling, spinning. Truth is no one wins when a child dies. Because we are all struggling to survive, one day to the next.

I have spent the last 18 months failing. Failing at finding myself support. Failing at finding support for our living son. Failing at finding our family support. 18 months of floundering. Some of it was because it took so much effort, I gave up. I would hit a wall, and could not muster the strength to go around it, or over it, or through it. So the wall stopped me. And it took time for me to regain the strength to fight forward. To have the ability to keep calling.To keep fighting. To keep questioning. To keep turning over every leaf until the right one was found. 18 months. But the truth is, is should not be this hard. None of it should have been this hard. I should not have had to feel like I was climbing Mt Everest to get the right support in place. It should not have been so overwhelming. It should have taken a few calls at most. I have made hundreds. Truth is, it should NOT be this hard to get support in place for autism, for grief, for trauma. For our son, for us. It should not be this difficult. Life should not be this hard. I should not have to advocate this hard to find help.

Nearly 3 years we have been trying to get some of these supports in place, and we are finally starting to find the right things. But they are still not perfect or all in place. I am still floundering. It is all just so hard, and it sucks. I have lost my mama bear fight. I have lost my roar. I feel like I fail everyday. And I need someone to help. Truth is no one will fight for us the way I once did. I fought for years for our son before cancer. For autism, for his cognitive and developmental delays. I advocated for 3 years before cancer. It was a challenge then. But it should not be this challenging to find the therapies and support any family needs. It should not be this hard. It is extremely difficult under regular stress. And I wanted to give up over and over again back then. But with grief, it feels impossible. And I did give up. It has taken me years to do what once took me months.

Nearly a year ago, our living son was officially diagnosed with autism. I still have nothing in place for him support wise. He has no therapy in place. We have not gotten any of the services in place. We keep hitting walls. With referrals. With finding providers. With insurance. We are finally starting to get our answers. To find the right places to get support in place. But I feel like a failure because it took so long to get any of it in place. Or to just get to this point where we still have a long way before care is actually given.

I know I am not a failure. I know that I am doing the best I can under extraordinary circumstances. But the world does not know that. The world does not know that it feels like a 5 mile hike, just to shower. Or planning an afternoon outing feels like I am planning a 3 week long vacation. That cooking dinner feels like I am planning a dinner party for 20. Everything feels distant, overwhelming, and difficult. I am isolated because it is hard to maintain friendships. Friendships have significantly changed in the face of all we have endured. Partly because I could not give what most wanted from me. I could barely just do me. And most can not handle the reality of my life. Our life. So life has become very small, isolated. And yes, it feels like we are abandoned. To others it seems our worst is over. But that is the lie. The worst is living everyday without the person who should be by your side. Living everyday in wonder of who that child would become, who he should have been. Living each day with hole in every photo. The place our child should be standing. Knowing that to everyone else we are a family of three. But we are not. We are a family of four.

My faith has gotten me from one minute to the next. But my faith does not make my pain gone. The hole gone. It makes it possible to live. And have hope that one day I will see my son again. It helps me to not question why. It helps that I know each day is God’s and not mine. But none of that magically takes away my suffering. Even Jesus wept. He knows suffering, and pain. And while it brings me comfort. Faith is not a blanket that heals the suffering, the pain. The void will always be present in my life. Knowing our living child should not be an only child, but should be a younger brother. And while he may not always be an only child, there is no replacing his big brother. There is no child to fill the hole that is meant for our son who died.

So here I am. 541 days since our son died. I have lived those days without my son by my side. The same number of days I lived hoping, praying, comforting, holding him while he fought against cancer. We have now lived as many days without our son, as we lived the life of trauma because of cancer. And one day, not too far from here we will live as long without our child, as we lived with our child.

Samuel “Sammy” Puma is my child. Forever my child. There is no hiding from my grief. From my greatest loss. There is nothing that can be said in speaking about memories of my son that would hurt. Or cause me sadness. The only thing that hurts is feeling forgotten. Feeling left behind. Feeling like our son will fade and his life had no meaning, no purpose and that he will not be remembered. Sammy is my child. Forever my child. I will forever mark his place in our family. Because he belongs. And Sammy is mine. Ours. Our child forever.

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